Okay so I am totally worried about jinxing myself BUT tomorrow will mark one full week of NO projectile vomitting from Champ!!! Was it a change in meds? A stronger dose? NOPE. I stopped the Zantac a week and a half ago because I wasn't convinced it was helping. He continued to vomit a few days after the Zantac was DCed, until last Sat. We made it 24 hours, no puke, now it's been almost 7 days! Not even 1 episode. I am not sure why exactly. Other than no more Zantac, the most major change has been the actual feeding process. I give Champ a LONG time to eat. I give him 1 1/2-2 ounces at a time, with many chances to burp in between. I then hold him upright for 5-10 minutes and feed him another 2 ounces. Repeat until he is full, and hold for as long as possible after the feed is completely finished. I used to do the same thing minus the 5-10 minute break after 1-2 ounces. I have given him Zantac 3 times since Sat because he kind of screamed a couple of times after eating and I was worried about the acidity causing him pain. But that has happened in about 5 days. I know I could continue the Zantac to guard against painful reflux, but I'm just not convinved it's doing any good, and, although I'm not sure if it's correlated, he hasn't vomitted since the frequency of giving him Zantac was GREATLY reduced.
I hope it lasts, but even if it doesn't, we had 6 days vomit-free!
I'll keep you updated!
Friday, March 30, 2007
Thursday, March 29, 2007
We went outside! Only after a slight O2 scare
Champ
Serena
The crew at the park
On Tuesday is was so nice out that we packed up the kids and were about to head to the park. Well, it didn't start off as the fun trip it ended up being. I carried Serena and her O2 tank down to the car and my Mom had Edwin. I got into the back seat and Edwin was screaming. I looked at him and his lips looked a little blueish to me. I got the same sinking feeling that I did when a nurse had unplugged him from his oxygen and hadn't noticed (I never posted about that, but it was a horrible experience and she was told not to come back to our home.) Anyway, maternal instinct set in and I threw the bag that my mom had placed on top of his O2 tank, and I saw that the "Christmas tree" that the tubing plugs into that is screwed onto the regulator has snapped in half, therefore not providing O2 through the tubing. There is no way to connect the tubing to the regulator without a "Christmas tree" so I immediately told my mom to hook Edwin up to Serena's tank and I grabbed her in her car seat and ran upstairs to the house. I got her hooked up to her O2 tank in the house and her monitor only read 90. Good girl! Edwin was fine, we never knew what his sats were because the monitor doesn't read when he moves his foot, but he was fine. It was scary though and shows just how much we rely on medical equipment that can easily break. I guess the way it was laid down just so caused it to snap in half.
So of course I thought about what I would have done had that happened while we were at the park. Well I now carry spare Christmas trees, although I think I had one in the diaper bag anyway but I didn't dare look for it in that moment. I know I have spare nasal cannulas, tegaderm, poseys, and probe stickies. I also always had a spare tank in the car, but no regulator on it. I always imagined the issue would be we ran out of O2, not that we would have a stupid piece of plastic break on usmakng the tank and the regulator unusable. Well anyway, I put the other regulator on the spare tank even though this regulator only goes from 250 to 500 and then to 750. Well the kiddos are being weaned by 50 ccs so that isn't ideal, but it will work in case of an emergency. Had it happened at the park I would have been very scared, but would have made adjustments. I figured I would have switched Edwin to Serena's tank and put him to 450 where he belongs, and would have turned up the broken one to 500 and held the tubing by the hole. Even though it isn't a secure way, at 500ccs it would have provided enough flow for Serena until we made the 5 minute drive home. Oh...life will be so much easier when they are off O2.
Anyway, we had a great time at the park. It was so good to be out and about. Edwin's 2 best friends, who are like uncles to Bean and Champ, met me, Edwin and my mom down at the park. We walked around, talked, and took Champ and Beana out to see the "real world." It was so good to get fresh air, if the weather is nice we will definitely go out again! This time with even more spare equipment.
p.s. Serena will be going to see an ENT specialist in Boston for her throat issues, we are hoping and praying they discover what is wrong, that is correctable, and does not entail any major surgery. We'll keep you updated.
Mommy, Daddy, Grammy and the twins
Daddy ruining the picture tryna wink
Serena
The crew at the park
On Tuesday is was so nice out that we packed up the kids and were about to head to the park. Well, it didn't start off as the fun trip it ended up being. I carried Serena and her O2 tank down to the car and my Mom had Edwin. I got into the back seat and Edwin was screaming. I looked at him and his lips looked a little blueish to me. I got the same sinking feeling that I did when a nurse had unplugged him from his oxygen and hadn't noticed (I never posted about that, but it was a horrible experience and she was told not to come back to our home.) Anyway, maternal instinct set in and I threw the bag that my mom had placed on top of his O2 tank, and I saw that the "Christmas tree" that the tubing plugs into that is screwed onto the regulator has snapped in half, therefore not providing O2 through the tubing. There is no way to connect the tubing to the regulator without a "Christmas tree" so I immediately told my mom to hook Edwin up to Serena's tank and I grabbed her in her car seat and ran upstairs to the house. I got her hooked up to her O2 tank in the house and her monitor only read 90. Good girl! Edwin was fine, we never knew what his sats were because the monitor doesn't read when he moves his foot, but he was fine. It was scary though and shows just how much we rely on medical equipment that can easily break. I guess the way it was laid down just so caused it to snap in half.
So of course I thought about what I would have done had that happened while we were at the park. Well I now carry spare Christmas trees, although I think I had one in the diaper bag anyway but I didn't dare look for it in that moment. I know I have spare nasal cannulas, tegaderm, poseys, and probe stickies. I also always had a spare tank in the car, but no regulator on it. I always imagined the issue would be we ran out of O2, not that we would have a stupid piece of plastic break on usmakng the tank and the regulator unusable. Well anyway, I put the other regulator on the spare tank even though this regulator only goes from 250 to 500 and then to 750. Well the kiddos are being weaned by 50 ccs so that isn't ideal, but it will work in case of an emergency. Had it happened at the park I would have been very scared, but would have made adjustments. I figured I would have switched Edwin to Serena's tank and put him to 450 where he belongs, and would have turned up the broken one to 500 and held the tubing by the hole. Even though it isn't a secure way, at 500ccs it would have provided enough flow for Serena until we made the 5 minute drive home. Oh...life will be so much easier when they are off O2.
Anyway, we had a great time at the park. It was so good to be out and about. Edwin's 2 best friends, who are like uncles to Bean and Champ, met me, Edwin and my mom down at the park. We walked around, talked, and took Champ and Beana out to see the "real world." It was so good to get fresh air, if the weather is nice we will definitely go out again! This time with even more spare equipment.
p.s. Serena will be going to see an ENT specialist in Boston for her throat issues, we are hoping and praying they discover what is wrong, that is correctable, and does not entail any major surgery. We'll keep you updated.
Mommy, Daddy, Grammy and the twins
Daddy ruining the picture tryna wink
Sunday, March 25, 2007
Pedi appointment
Hello everyone!
On Friday Serena and Edwin had a pedi appointment and their second to last RSV shot (in MA we go until the end of April...ugh cabin fever is in total effect!) Anyway, it was a tough visit because in addition to the RSV shot, Serena and Edwin got 3 additional shots (their 6 month immunizations!) It was horrible. Out of nowhere I started crying..like couldn't hold it back. Champ SCREAMED his whole face was beet red. Real tears poured down his face. I was crushed. The doctor hands me a tissue and was like "sometimes it's harder on Mommies" yeah I think so. Then of course I had to witness Serena having hers done. She was wide eyed smiling at me and the Dr and all of a sudden the first shot. It was so sad. She recovered much better than Champ. A snuggle and kiss go a long way with my Beana. Driving to Wendy's to indulge in some comfort food, I still felt the lump in my throat. They went through so much in the NICU, and I cried then too, I just feel bad when I know they are in pain.
Well then of course, as the Doc had warned me, they were fussy and grumpy after their LONG nap upon arriving home. Oh wait I almost forgot!!!
Before we got home, I stopped at WIC to pick up the checks for their formula (we are lucky, in MA if your children are on medicade you automatically receive WIC). Anyway, I had an appointment so I figured it wouldn't take long. The kids had been fed and were alseep and the nurse was in the back seat with them. So I left the keys in so she could hear some music and I told her I would be back. Well it took longer than I thought, and I even had to pull the "excuse me, I need to be seen right away, I have infant twins on oxygen in the car with a nurse and I really need to get back out to them." That kinda sped things along but we had to have this whole interview type of thing because Serena and Edwin are on Similac, and the WIC contract got bought out by Good Start, so I have to have special permission from the Pedi and had to do this paperwork...it was a pain. Anyway, I come back out and I go to start the car...well it won't start! Battery died! I semi-panicked for a moment, then I realized although the situation seemed bad, i.e. I have my two infants in the car, on oxygen, no power for heat, etc., it wasn't really a huge emergency. Afterall, we were at a hospital, we were within 10 minutes walking distance from home and I had the double stroller in the car, we were in a parking lot FULL of people, plus I have AAA. I usually have jumper cables, but of course my mom used them and never put them back..I need my own with a battery pack...learned that the hard way. So needless to say security from the hospital located some jumpers, and by some miracle the man parked next to me was actually in his car waiting for someone and had been alerted to the situation...he didn't have cables...he was the fist person I asked. So he was nice enough to pull his car closer to mine and jump it. We made it home and although I was slightly frazzled...(I called Edwin Sr's work in a semi-meltdown) we made it safe and sound.
So back to the babies. They slept through it all, and continued to sleep at home. They woke up really fussy, the kind of cry you know they are uncomfortable. I gave them Tylenol for the first time (my dad is so anti-medication, I admit those fears are engrained in me). But of course they were fine. Very sleepy, which also a little scary because they weren't waking up for their feeds (they eat every 3-4 hours). So I awoke them a couple of times to try and get them to eat, and they really wanted no part of it. They ate some but no where near the 3-5 ounces they normally take. So of course I was worried about them getting dehydrated, but I knew they were fine when they had wet diapers at every change. They still are not 100% themselves, kinda sleepy still, but definitely better than Friday.
So in important news:
Serena weighed 9 lbs 1/2 oz and is 20 1/2" long
Edwin weighed 9 lbs 10 1/2 ozs and is 20 1/4 " long
I was happy with this weight gain. You figure they weighed about 5.5 lbs upon discharge which was on Jan 29. They have gained a good amount since then, and hopefully will continue to do so.
We decided to take them to the park for all of 7 minutes because I was freaked out by the thought of being outside and not for a Drs visit, but it was nice to put them in their double stoller and get some fresh air really quickly. They slept through it, but were so relaxed. I think they'll enjoy being outside. When it gets consistently warmer I will bring them outside more. Even though RSV season doesn't end until the end of April, as long as we are outside as opposed to indoors with germs everywhere, I think it should be okay to take them for a walk. Especially since they are all buddled up in the car seats, and I can cover them like they're in a cave. Edwin Sr asked if we could bring them to Wal MArt after our park ride and I was like...um no that's not a good idea. Of course I want to get out and shop but not with them yet. Plus, once it is safe to go to the store (if I ever feel it is) I plan to put a sign on the stroller saying something to the effect of:
"Hi, yes we are twins...a boy and a girl, and we are on oxygen because we were born premature. Our mommy and daddy are very worried about us getting sick, so they ask that you don't come over to see us and visit right now. Thank you!"
I know that sounds weird, but even with healthy full term twins, or any multiples...it probably gets worse wih the more there are...people want to look and ask questions.
"Are they identical?" Well...they are boy/girl, so I'm guessing No. haha it happens EVERY time I tell people I have twin boy/girl.
"Why are they on oxygen? What's wrong with them?" Um..."wrong with them" is not so nice, but if I decide to get into why they are on oxygen more questions follow. Like:
"How old are they?" I still don't know how to answer that. If I say 6 months, they will think something is REALLY wrong. If I say 2 months, then it's more like well how do you have them home on oxygen if they are only 2 months old?
Then there's always the nice people who just want to look at babies and see how cute they are. Which is nice, but it's uncomfortable when they say :"oh can I see them?" and I just say "no." It deserves an explanation why I don't want them to peek, which involves a discussion. Therefore, I think maybe the sign would be better. Although it might be kind of conceited because it assumes people really want to see or ask about my twins...like they are so special or soemthing...haha which of course they are, but you know what I mean!
So I think for now we will be antisocial and put up a sign. I'll take a picture of of the sign...I think it'll be kinda funny.
Daddy is so proud of her jab!
Serena doing tummy time and brother watching!
Friday, March 23, 2007
Therapy
Hello all.
I have a question about therapy...no no no not for me, although I could probably use it living with Edwin Sr. Just kidding hunnie...haha.
I just wanted to know what type of, and how often, your preemies had therapy at 2 months adjusted age. Serena and Edwin's original due date was 1/21/07 so they are about 2 months. EI comes bi-weekly, but no OT or PT. She basically talks to me about what they're doing and this past week she showed me some stretches and some more tummy time positions. I just want to make sure we are not missing out on some therapy you found to be helpful, and if the frequency is approprite. I planned on having services weekly, but she seems to think the focus should be on them satting well and gaining weight; which of course I agree with, but I want to insure that we aren't missng out on something that will be helpful to Bean and Champ. What was your therapy experience like? Thanks guys!
I have a question about therapy...no no no not for me, although I could probably use it living with Edwin Sr. Just kidding hunnie...haha.
I just wanted to know what type of, and how often, your preemies had therapy at 2 months adjusted age. Serena and Edwin's original due date was 1/21/07 so they are about 2 months. EI comes bi-weekly, but no OT or PT. She basically talks to me about what they're doing and this past week she showed me some stretches and some more tummy time positions. I just want to make sure we are not missing out on some therapy you found to be helpful, and if the frequency is approprite. I planned on having services weekly, but she seems to think the focus should be on them satting well and gaining weight; which of course I agree with, but I want to insure that we aren't missng out on something that will be helpful to Bean and Champ. What was your therapy experience like? Thanks guys!
Wednesday, March 21, 2007
Tuesday, March 20, 2007
Okay, back to the cute pictures
Okay, Okay, I couldn't take too long a break from posting pictures of my little ones, even though the conversations I stated I was active on in my previous post are still going on.
Conversation about prematurity is an issue that deserves a lot of time and consideration, even for those of you who think they will have no issues... of course I hope no one does but it's important to be prepared just in case. Don't get too scared and wrapped up in individual studies, but do discuss these things openly and honestly with your partner and family. It's important.
ENOUGH preaching Mommy!!! Show them pictures of us taking a bath!
I DON'T think I like this guys! Poor Champ...he doesn't really like baths much.
Serena's turn
Serena looking so scared of the washcloth...she did really well though, not nearly as upset about it as Edwin.
Conversation about prematurity is an issue that deserves a lot of time and consideration, even for those of you who think they will have no issues... of course I hope no one does but it's important to be prepared just in case. Don't get too scared and wrapped up in individual studies, but do discuss these things openly and honestly with your partner and family. It's important.
ENOUGH preaching Mommy!!! Show them pictures of us taking a bath!
I DON'T think I like this guys! Poor Champ...he doesn't really like baths much.
Serena's turn
Serena looking so scared of the washcloth...she did really well though, not nearly as upset about it as Edwin.
Monday, March 19, 2007
A break from the cute pictures
I've decided to take a break from the cute pictures and write a little about how I'm feeling right now and what I've been up to the past couple of days...besides being Mommy...feeding, burping, changing poopies, etc etc.
I have become addicted to reading blogs. Not just preemie mom blogs (although they are by far my favorite), but also reading some blogs I'm sure many of the preemie moms are familiar with. Blogs that deal with questions and debates related to prematurity...you know those ever so puzzling viability debates. I have gained a lot of respect for the authors and those who comment. I know this may be hard to hear for some people, and I didn't say I agree with it all, but I do respect them because they are bringing the issues of prematurity to the table.
Prematurity is something that needs to be discussed a whole heck of a lot more. I would like to think of myself as a semi-intelligent person, I graduated cum laude from a pretty darn respectable college and earned an academic scholarship to law school, but I might as well have been educated by bunny rabbits when it came to my knowledge of prematurity. Although I obviously knew what prematurity was, I never thought "it" would happen to me, nor knew anything about the secret world of the NICU and post-NICU life.
Funny story...It was confirmed I was having twins at 7 weeks, suspected twin pregnancy at only 5 weeks. My high-risk OB said to me..."we automatically consider you high-risk because you're having multiples, but in looking at all the other factors, you are the best candidate for a twin pregnancy. You are the least likely to deliver preterm."
Well statistically she was right. I was in my early 20s, healthy, not overweight, nonsmoker, nondrinker, no history of STDs, no health issues whatsoever, they were spontaneous twins...no IVF or fertility drugs, they were fraternal twins, there was a thick membrane separating the two amniotic sacs, etc etc etc. Anyway, I had never given any thought to what I would do if my babies were born early, in fact, I didn't know such decisions even existed. I guess I figured either a baby could be "old" enough to live or he/she couldn't...I didn't think I would have any choice in the matter. But while I lay in a hospital bed praying they could stop my labor, a war was waging concerning the very decision I never knew I even had the right to make.
"Do you want us to resuscitate if your twins are born within the next week or two? You are on what we call the cusp of viability." Do I what? Are you asking if I want you to try and save my twins? YES OF COURSE SAVE THEM PLEASE!!! They are our son and daughter, we love them, please try and save their lives.
Everything about CLD, BPD, ROP, NEC, long term affects went right out the window. Thankfully I was at least informed of them, but I was 3 centimeters dialated, scared and depressed out of my mind, and trying desperately not to move for fear that any movement would aggravate my already contracting uterus. I wasn't focused on the brief glimpse of the secret NICU world these Drs were allowing me to peek into. I didn't really care at that point. I had bonded and wished so much for these little ones, I certainly wasn't going to fully digest what they were saying. Plus, I was on medications to stop my labor, I was 3 centimeters dialated, but that hadn't changed in hours, they caught my preterm labor in time, I was going to be on bedrest for the next 10 weeks...I wasn't delivering any time soon. HA yeah right!
In an instant (2 1/2 days later) my world changed. "She is complete. Call the OR and the NICU stat."
Oh my God! Edwin call my mom!!! Edwin: "Hi Jamie. Um...Stephanie wants you to come here now." (mind you it's 1am) "EDWIN tell her I'm having the babies NOW!!!" So much happened in those few moments, but one thing that didn't was the question of whether or not I wanted them to try and save my tiny son and daughter. I had no idea what I was in for and even the best explanation could never have prepared me.
The NICU is a place I will visit again and again in spite of the pain we experienced there. We'll visit year after year to thank the Drs, nurses, respiratory therapists, and the like for saving our children...and also for being honest. Was it easy to hear "Your son has close a zero percent of survival, if he survives it will be nothing short of a miracle", of course not. But it was real and it was honest, and I appreciated it. We also heard "I think Edwin has a shot. If you're on board I think we should give him a little more time." They helped assure me that Little Edwin would decide...that he would declare himself. We got to discuss and decide what was right for our family with the full support of the NICU. There were limits to what we were willing to do. Through screaming tears and angry punches to walls, Edwin and I discussed what we thought was best for our little Edwin and Serena, of course all with the loving support of our family (especially supportive to me...my mom and dad). The NICU team, Edwin, and our family made me feel it was okay not to 100% blindly keep treating. I believe, and no one will ever convince me otherwise, that Little Edwin chose to stay with us. We were not willing to put him through PDA surgery if it was clear he was not going to survive. His last moments would be spent free of pain, wires, the ventialtor, and beeping monitors. He would be held lovingly in our arms, showered with all the kissed and hugs we could give. So many days, with warm tears dripping down my face, I silently told Little Edwin that I loved him so much and wanted him to stay so badly, but I told him that if he had to go I would listen to him and not keep him here against his will. I know some people against saving 23 weekers will say we did too much, but in my heart I believe we listened to our babies and we did right by them. We watched as one family struggled with these same issues, and could not come to grips with the reality that their precious daughter, twin B, was not going to make it no matter what the NICU team tried to do. What an enormous weight on a parent's shoulders...having to let your child go. The sickening feeling remembering those days will haunt me forever. Thank you Champ and Bean for showing us what was best...I would have accepted things either way...although I can't deny the utter happiness and gratitude I feel that you were able to stay with us.
My heart aches beyond words for the parents who lose their babies. A special feeling of sorrow goes out to those who lose a preemie in the NICU...especially a twin. I came so incredibly close to that reality I just can't hold back the tears when I read about parents who lost so much.
I don't know if there is any real point to this post per say. I guess I just need to get these feelings out. I've been commenting a lot on these other blogs and it rehashes what we've been through as a family over the past 6 months. We almost lost our children, I sometimes forget that haunting reality when I'm enjoying their smiles and beautiful faces. There are people out there who, had Serena and Edwin been theirs, would never have seen them the way they are now. They wouldn't have witnessed the first time they opened their eyes in the NICU, or the first time they took their entire feed PO, or their first bath, or their first real smiles. Maybe missing out on these things would protect them from the unknown future...possible issues related to their early birth. Either way, I think they would have missed out on too much, and I am pretty thankful I'm not.
If for some reason things get tough, and we get some spirit crushing news, I vow to come back to this post and remember how thankful I am for Serena and Edwin. I vow to think about those who have lost their preemies and never got to enjoy the things I'm enjoying right now. I promise to be thankful for life and to honor life in spite of it's many imperfections. I will love Serena and Edwin for who they are, and I will never hate myself for my decisions. I did what I believe was best for you guys and I love you with all of my heart.
I have become addicted to reading blogs. Not just preemie mom blogs (although they are by far my favorite), but also reading some blogs I'm sure many of the preemie moms are familiar with. Blogs that deal with questions and debates related to prematurity...you know those ever so puzzling viability debates. I have gained a lot of respect for the authors and those who comment. I know this may be hard to hear for some people, and I didn't say I agree with it all, but I do respect them because they are bringing the issues of prematurity to the table.
Prematurity is something that needs to be discussed a whole heck of a lot more. I would like to think of myself as a semi-intelligent person, I graduated cum laude from a pretty darn respectable college and earned an academic scholarship to law school, but I might as well have been educated by bunny rabbits when it came to my knowledge of prematurity. Although I obviously knew what prematurity was, I never thought "it" would happen to me, nor knew anything about the secret world of the NICU and post-NICU life.
Funny story...It was confirmed I was having twins at 7 weeks, suspected twin pregnancy at only 5 weeks. My high-risk OB said to me..."we automatically consider you high-risk because you're having multiples, but in looking at all the other factors, you are the best candidate for a twin pregnancy. You are the least likely to deliver preterm."
Well statistically she was right. I was in my early 20s, healthy, not overweight, nonsmoker, nondrinker, no history of STDs, no health issues whatsoever, they were spontaneous twins...no IVF or fertility drugs, they were fraternal twins, there was a thick membrane separating the two amniotic sacs, etc etc etc. Anyway, I had never given any thought to what I would do if my babies were born early, in fact, I didn't know such decisions even existed. I guess I figured either a baby could be "old" enough to live or he/she couldn't...I didn't think I would have any choice in the matter. But while I lay in a hospital bed praying they could stop my labor, a war was waging concerning the very decision I never knew I even had the right to make.
"Do you want us to resuscitate if your twins are born within the next week or two? You are on what we call the cusp of viability." Do I what? Are you asking if I want you to try and save my twins? YES OF COURSE SAVE THEM PLEASE!!! They are our son and daughter, we love them, please try and save their lives.
Everything about CLD, BPD, ROP, NEC, long term affects went right out the window. Thankfully I was at least informed of them, but I was 3 centimeters dialated, scared and depressed out of my mind, and trying desperately not to move for fear that any movement would aggravate my already contracting uterus. I wasn't focused on the brief glimpse of the secret NICU world these Drs were allowing me to peek into. I didn't really care at that point. I had bonded and wished so much for these little ones, I certainly wasn't going to fully digest what they were saying. Plus, I was on medications to stop my labor, I was 3 centimeters dialated, but that hadn't changed in hours, they caught my preterm labor in time, I was going to be on bedrest for the next 10 weeks...I wasn't delivering any time soon. HA yeah right!
In an instant (2 1/2 days later) my world changed. "She is complete. Call the OR and the NICU stat."
Oh my God! Edwin call my mom!!! Edwin: "Hi Jamie. Um...Stephanie wants you to come here now." (mind you it's 1am) "EDWIN tell her I'm having the babies NOW!!!" So much happened in those few moments, but one thing that didn't was the question of whether or not I wanted them to try and save my tiny son and daughter. I had no idea what I was in for and even the best explanation could never have prepared me.
The NICU is a place I will visit again and again in spite of the pain we experienced there. We'll visit year after year to thank the Drs, nurses, respiratory therapists, and the like for saving our children...and also for being honest. Was it easy to hear "Your son has close a zero percent of survival, if he survives it will be nothing short of a miracle", of course not. But it was real and it was honest, and I appreciated it. We also heard "I think Edwin has a shot. If you're on board I think we should give him a little more time." They helped assure me that Little Edwin would decide...that he would declare himself. We got to discuss and decide what was right for our family with the full support of the NICU. There were limits to what we were willing to do. Through screaming tears and angry punches to walls, Edwin and I discussed what we thought was best for our little Edwin and Serena, of course all with the loving support of our family (especially supportive to me...my mom and dad). The NICU team, Edwin, and our family made me feel it was okay not to 100% blindly keep treating. I believe, and no one will ever convince me otherwise, that Little Edwin chose to stay with us. We were not willing to put him through PDA surgery if it was clear he was not going to survive. His last moments would be spent free of pain, wires, the ventialtor, and beeping monitors. He would be held lovingly in our arms, showered with all the kissed and hugs we could give. So many days, with warm tears dripping down my face, I silently told Little Edwin that I loved him so much and wanted him to stay so badly, but I told him that if he had to go I would listen to him and not keep him here against his will. I know some people against saving 23 weekers will say we did too much, but in my heart I believe we listened to our babies and we did right by them. We watched as one family struggled with these same issues, and could not come to grips with the reality that their precious daughter, twin B, was not going to make it no matter what the NICU team tried to do. What an enormous weight on a parent's shoulders...having to let your child go. The sickening feeling remembering those days will haunt me forever. Thank you Champ and Bean for showing us what was best...I would have accepted things either way...although I can't deny the utter happiness and gratitude I feel that you were able to stay with us.
My heart aches beyond words for the parents who lose their babies. A special feeling of sorrow goes out to those who lose a preemie in the NICU...especially a twin. I came so incredibly close to that reality I just can't hold back the tears when I read about parents who lost so much.
I don't know if there is any real point to this post per say. I guess I just need to get these feelings out. I've been commenting a lot on these other blogs and it rehashes what we've been through as a family over the past 6 months. We almost lost our children, I sometimes forget that haunting reality when I'm enjoying their smiles and beautiful faces. There are people out there who, had Serena and Edwin been theirs, would never have seen them the way they are now. They wouldn't have witnessed the first time they opened their eyes in the NICU, or the first time they took their entire feed PO, or their first bath, or their first real smiles. Maybe missing out on these things would protect them from the unknown future...possible issues related to their early birth. Either way, I think they would have missed out on too much, and I am pretty thankful I'm not.
If for some reason things get tough, and we get some spirit crushing news, I vow to come back to this post and remember how thankful I am for Serena and Edwin. I vow to think about those who have lost their preemies and never got to enjoy the things I'm enjoying right now. I promise to be thankful for life and to honor life in spite of it's many imperfections. I will love Serena and Edwin for who they are, and I will never hate myself for my decisions. I did what I believe was best for you guys and I love you with all of my heart.
Sunday, March 18, 2007
Cannula Free!!! (just for a second or two)
I think you can notice that Serena's right nostril is pretty dialated. The NICU we were at did a lot of nasal intubation...held the tube in place better and sought to avoid oral aversion. It's a little noticable and maybe it will get better with time, but if not, we avoided oral aversion, and we'll take a little round nostril over that any day!
Saturday, March 17, 2007
I captured it!
I finally captured Beanie's smile! Like the pictures in the last post, both kids have been pulling at their cannulas all day and I neglected to change tape before I snapped away. Now I kinda wish I had, but I have to post the first captured smile of my beautiful girl!
p.s. th ereal blog of the day is below, but I added this after I published it because Serena waited until then to smile when I had the camera in hand! Read below for the real post of the day and more pictures!
p.s. th ereal blog of the day is below, but I added this after I published it because Serena waited until then to smile when I had the camera in hand! Read below for the real post of the day and more pictures!
!
Champ and Bean aren't cooperating, but Mommy and Daddy look semi normal for once, so I had to post this one!
Hello all.
All is well with us...even though we got a snow storm yesterday and it makes it seem like the end of RSV season and the beginning of warm weather will NEVER come! I am so anxious to get the twins out and about! I have cabin fever, and I would definitely clssify myself as a homebody, so you know it's bad.
We took the twins to visit the NICU on Wednesday because it was so warm...close to 60...figures New England weather, 2 days later we have a snow storm...::sigh::. Anyway, we LOVED seeing the nurses and Drs. We saw one of our favorite nurses, Edwin's primary, we missed out on Serena's primary, but we hope to see her soon! We also saw the Dr who was in charge the month the twins were born. He gave us our NICU consult prior to delievery, and he was the one who told me Champ had hope when we had our first family meeting. When others doubted his chances of survival, this Dr restored hope. We are so thankful for him, and especially for our nurses, they were Serena and Edwin's greatest advocates (other than us of course! :) )
Well I mentioned last post that I was happy the twins made a smooth transition to straight formula. I spoke too soon. All week the little ones have been struggling in the poop department. My kiddos used to have BMs like no problem...like 3 a day on average. Breast milk sure is best. Anyway, now it's a struggle and the look on their little faces when they were trying to go breaks my heart. Guilt poured in and I wish I had continued pumping...how practical it would have been is beyond me, but I still feel bad about it. I called the pedi like I said last time to ask about the iron suppliments, and she said continue them (this was Mon when the lack of pooping was not apparent yet.) Well I called back yesterday and asked if we should DC the iron, or give them diluted apple juice. We are keeping the iron and giving the babies 1 ounce of diluted prune juice morning and night. GROSS...they like it though. Serena kinda makes a face like what the heck is this? But sucks it down. Edwin loves it and seems to not know it's not milk. Well the formula smells gross and so does prune juice, so maybe he just likes smelly things? We just started this yesterday afternoon, and although they went, (they never went 24 hours without going anyway, but definitely slowed down and it was more of a struggle for them to go), it didn't come aflowin' like I thought it would (sorry too many details.) Hopefully things improve but I don't know how long we should continue to do the prune juice. I wonder if eventually they will get used to the formula and it will become easier? I wish mommy's bodies just made milk that came out when needed without a silly machine. Oh well.
In other news, I can't recall if I mentioned they are filming a documentary about amateur boxing and have already come to tape Edwin and I with Beanie and Champ? Well, they did and it was pretty cool. They just called and want to come back. They think our story is inspiring, which I would have to agree with. I guess the film maker is intrigued by our family dynamic, and since Edwin has managaed to become the star of the documentary, his family life has become a big part of the film...pretty cool. So I started thinking about our family dynamic and it is pretty interesting...he said we should have our own show...haha o man what they'd capture.
You already know a little about us, but I'll share more. Plus Beanie and Champ will read this one day and I want to see if Mommy and Daddy have changed a whole lot.
I think a big part of who we are has to do with Edwin and I being polar opposites...and I mean that. Sorry Edwin but here we go....I am the planner, I am the one who worries about everything, I remember almost everything, I want things done and done right, I'm in charge of the bills, etc etc.
Edwin is carefree, forgets A LOT, waits until the last minute for everything, and has to be reminded to do nearly everything. But these things make him who he is. I do believe he will change some as he grows older (he'll only be 22 in May) and dealing with all we've been through with having 2 children at 23 weeks, I think he is amazing. Serena and Edwin were an unplanned blessing. With my first year of law school about to begin and the 2008 Olympic qualifing year approaching, we were not planning to get pregnant. A one time event changed everything, and for that we are both eternally greatful. Having Bean and Champ born so premature was also not expected...like I've said so many times, to this day we have NO IDEA why I went into preterm labor. Edwin could have walked away, a very nice younger mom in the NICU with a 25 weeker had that happen to her. The father was there through the pregnancy, but when he saw how sick his son was, he just walked away. I don't think they lived together anyway, but no visits, no phonecalls, NOTHING!
Being a young parent isn't easy,especially not with twins, watching your dreams of the Olympic gold possibly being swept away because you miss tournaments due to your children being critically ill is tough, realizing that you'll probably lose your academic scholarship because you can't go to law school anytime soon is difficult, trying to work, work out, wake up, and do it over and over again is a challege, but in spite of it all here we are. Standing side by side, by Serena and Edwin's side, and although it's not always peachy keen, we do it, and we do it well. I'm not one to give too much credit for people doing things they should anyway (I never got money for getting As in school like my peers, I got in trouble if I didn't get As). We are parents and we BOTH need to scarifice for our children. I don't go on and on about Edwin NOT walking away, because he shouldn't. He doesn't get too much credit for doing what a father is obligated to do; however, I acknowledge how difficult it is, and how much he has given up for Serena and Edwin, and I do admire him for that. At only 21 I think he has really shown maturity and unselfish love beyond his years. And even though he plays a lot of video games in his spare time, and has to be reminded to take out the trash EVERY week, he is a loving and dedicated father, and a supportive mate. I can't wait to plan our wedding (we'll have it after the twins are off O2 so they can be a real part of the ceremony).
This blog kind of went off on a tangent, but I want Edwin to know how important he is to us, and I want the twins to know what a good Daddy he was from day 1.
In twin medical news, Serena is doing perfectly at 250 O2 and Edwin was weaned to 450 today and is satting 97-100! =Slow and steady wins the race so here we go kids. Down by another 50 in 2 weeks, just keep those sats above 93 and down we go!
And in happy news smiles have been repeated, and repeated more frequently! Serena especially when she is on her changing table and mommy talks and smiles at her! The most important thing to me is that my two are happy, so smiles mean so much!!!! I captured Beanie smiling in her dreams in one of the pics...I'll try to get a real live one from each soon!
Champ's tape for his nasal cannual looks all a mess, but I hate peeling it off just because it looks bad. This morning he had a little red rash where his tape was on his left cheek, so I didn't want to peel the other side off just to put a new peice on in case he is now sensitive to it. Hopefully with lotion it will clear.
Good boy satting 100%!
**Daddy made me delete the pic of him feeding Beanie..."too much leg Steph!"** Sorry!
Beanie is having a good dream!
Munchkins
p.s. I just looked at the pictures up close...that's leftover prune juice on Beanie's face...it's working...she just let me know that through the gift of smell!
Hello all.
All is well with us...even though we got a snow storm yesterday and it makes it seem like the end of RSV season and the beginning of warm weather will NEVER come! I am so anxious to get the twins out and about! I have cabin fever, and I would definitely clssify myself as a homebody, so you know it's bad.
We took the twins to visit the NICU on Wednesday because it was so warm...close to 60...figures New England weather, 2 days later we have a snow storm...::sigh::. Anyway, we LOVED seeing the nurses and Drs. We saw one of our favorite nurses, Edwin's primary, we missed out on Serena's primary, but we hope to see her soon! We also saw the Dr who was in charge the month the twins were born. He gave us our NICU consult prior to delievery, and he was the one who told me Champ had hope when we had our first family meeting. When others doubted his chances of survival, this Dr restored hope. We are so thankful for him, and especially for our nurses, they were Serena and Edwin's greatest advocates (other than us of course! :) )
Well I mentioned last post that I was happy the twins made a smooth transition to straight formula. I spoke too soon. All week the little ones have been struggling in the poop department. My kiddos used to have BMs like no problem...like 3 a day on average. Breast milk sure is best. Anyway, now it's a struggle and the look on their little faces when they were trying to go breaks my heart. Guilt poured in and I wish I had continued pumping...how practical it would have been is beyond me, but I still feel bad about it. I called the pedi like I said last time to ask about the iron suppliments, and she said continue them (this was Mon when the lack of pooping was not apparent yet.) Well I called back yesterday and asked if we should DC the iron, or give them diluted apple juice. We are keeping the iron and giving the babies 1 ounce of diluted prune juice morning and night. GROSS...they like it though. Serena kinda makes a face like what the heck is this? But sucks it down. Edwin loves it and seems to not know it's not milk. Well the formula smells gross and so does prune juice, so maybe he just likes smelly things? We just started this yesterday afternoon, and although they went, (they never went 24 hours without going anyway, but definitely slowed down and it was more of a struggle for them to go), it didn't come aflowin' like I thought it would (sorry too many details.) Hopefully things improve but I don't know how long we should continue to do the prune juice. I wonder if eventually they will get used to the formula and it will become easier? I wish mommy's bodies just made milk that came out when needed without a silly machine. Oh well.
In other news, I can't recall if I mentioned they are filming a documentary about amateur boxing and have already come to tape Edwin and I with Beanie and Champ? Well, they did and it was pretty cool. They just called and want to come back. They think our story is inspiring, which I would have to agree with. I guess the film maker is intrigued by our family dynamic, and since Edwin has managaed to become the star of the documentary, his family life has become a big part of the film...pretty cool. So I started thinking about our family dynamic and it is pretty interesting...he said we should have our own show...haha o man what they'd capture.
You already know a little about us, but I'll share more. Plus Beanie and Champ will read this one day and I want to see if Mommy and Daddy have changed a whole lot.
I think a big part of who we are has to do with Edwin and I being polar opposites...and I mean that. Sorry Edwin but here we go....I am the planner, I am the one who worries about everything, I remember almost everything, I want things done and done right, I'm in charge of the bills, etc etc.
Edwin is carefree, forgets A LOT, waits until the last minute for everything, and has to be reminded to do nearly everything. But these things make him who he is. I do believe he will change some as he grows older (he'll only be 22 in May) and dealing with all we've been through with having 2 children at 23 weeks, I think he is amazing. Serena and Edwin were an unplanned blessing. With my first year of law school about to begin and the 2008 Olympic qualifing year approaching, we were not planning to get pregnant. A one time event changed everything, and for that we are both eternally greatful. Having Bean and Champ born so premature was also not expected...like I've said so many times, to this day we have NO IDEA why I went into preterm labor. Edwin could have walked away, a very nice younger mom in the NICU with a 25 weeker had that happen to her. The father was there through the pregnancy, but when he saw how sick his son was, he just walked away. I don't think they lived together anyway, but no visits, no phonecalls, NOTHING!
Being a young parent isn't easy,especially not with twins, watching your dreams of the Olympic gold possibly being swept away because you miss tournaments due to your children being critically ill is tough, realizing that you'll probably lose your academic scholarship because you can't go to law school anytime soon is difficult, trying to work, work out, wake up, and do it over and over again is a challege, but in spite of it all here we are. Standing side by side, by Serena and Edwin's side, and although it's not always peachy keen, we do it, and we do it well. I'm not one to give too much credit for people doing things they should anyway (I never got money for getting As in school like my peers, I got in trouble if I didn't get As). We are parents and we BOTH need to scarifice for our children. I don't go on and on about Edwin NOT walking away, because he shouldn't. He doesn't get too much credit for doing what a father is obligated to do; however, I acknowledge how difficult it is, and how much he has given up for Serena and Edwin, and I do admire him for that. At only 21 I think he has really shown maturity and unselfish love beyond his years. And even though he plays a lot of video games in his spare time, and has to be reminded to take out the trash EVERY week, he is a loving and dedicated father, and a supportive mate. I can't wait to plan our wedding (we'll have it after the twins are off O2 so they can be a real part of the ceremony).
This blog kind of went off on a tangent, but I want Edwin to know how important he is to us, and I want the twins to know what a good Daddy he was from day 1.
In twin medical news, Serena is doing perfectly at 250 O2 and Edwin was weaned to 450 today and is satting 97-100! =Slow and steady wins the race so here we go kids. Down by another 50 in 2 weeks, just keep those sats above 93 and down we go!
And in happy news smiles have been repeated, and repeated more frequently! Serena especially when she is on her changing table and mommy talks and smiles at her! The most important thing to me is that my two are happy, so smiles mean so much!!!! I captured Beanie smiling in her dreams in one of the pics...I'll try to get a real live one from each soon!
Champ's tape for his nasal cannual looks all a mess, but I hate peeling it off just because it looks bad. This morning he had a little red rash where his tape was on his left cheek, so I didn't want to peel the other side off just to put a new peice on in case he is now sensitive to it. Hopefully with lotion it will clear.
Good boy satting 100%!
**Daddy made me delete the pic of him feeding Beanie..."too much leg Steph!"** Sorry!
Beanie is having a good dream!
Munchkins
p.s. I just looked at the pictures up close...that's leftover prune juice on Beanie's face...it's working...she just let me know that through the gift of smell!
Wednesday, March 14, 2007
Adorable pictures!
They are too cute! (I know I'm biased)
Yummy you taste good sista!
Here eat my fist brother!
Yummy you taste good sista!
Here eat my fist brother!
Monday, March 12, 2007
Feeling better
Look at my beautiful girl!
Beana in her new summer hat Grammy got in FL!
Champ admiring his toys
Champ missed Grammy!
Daddy, Champ, and Uncle Ethan!
"The guys"
Uncle E feeding feeding Champ
Abd again
And again
Prettiest
The smirk!
Thanks all for your words of encouragement...sometimes I don't know what I'd do without my blog and preemie mom friends.
The twins are doing great...eating so much! Sad new...the frozen breast milk is gone...I had to stop pumping a little after the twins came home because it became so time consuming trying to feed both twins (the last two weeks in the they got hooked on bottle feedings on the overnights and certain feedings during the day when I was preparing for their arrival home. I ended up having to bottle feed them both, then try and pump once I got them settled, just to realize it was almost time to get their bottles ready for the next feed...you figure it was taking them betweeen 30-40 minutes to eat, 20-30 to hold Champ after he ate and then I wanted to hold Beanie as well because I looooove her too, then about 20 minutes to pump and store the milk. By the time I was done pumping and maybe used to restroom, it was about time to start thinking about getting bottles warmed and diapers changed for the next feeding. And let's not even talk about trying to feed and pump overnight. Anyway, we recognized it was too stressful on me and taking too much time away from enjoying the twins while asleep (holding) and awake (playing), and I am at peace with the decision I made to discontinue pumping. I tried hard, and they nursed in the NICU and received my milk for 5 months. I tried my best and that's what counts. Although of course I am a little bummed the frozen supply is gone. Luckily they had zero problem transitioning to straight formula. They gobbled it up like it tasted the same...thank GOD! I called the pedi today to ask if they still needed their iron suppliment and vitamin since now they are on straight formula. She hasn't called back yet, so we'll see.
Champ is officially off Pregnisolone (steroid) and doing great! I am so happy...let's keep praying he does fine without it. He has been on steroids FOREVER (scary thought) but he is getting big I think new lung tissue has grown and he is stronger in the lung department.
Serena has her barium swallow scheduled. We need to check on her because not only does she have a hoarse cry, she also chokes when eating quite a bit. I pray everything is okay and she will not need surgery or anything. We will also be seeing a ENT specialist in Boston, but no date yet. Anyone know anything about a barium swallow? Will she hate it? What can I expect. Of course I will research, but I like to hear the personalized stories...much more helpful I think.
All in all we had a good weekend. I got some cute pics of the twins and Champ and his Uncle Ethan!
Beana in her new summer hat Grammy got in FL!
Champ admiring his toys
Champ missed Grammy!
Daddy, Champ, and Uncle Ethan!
"The guys"
Uncle E feeding feeding Champ
Abd again
And again
Prettiest
The smirk!
Thanks all for your words of encouragement...sometimes I don't know what I'd do without my blog and preemie mom friends.
The twins are doing great...eating so much! Sad new...the frozen breast milk is gone...I had to stop pumping a little after the twins came home because it became so time consuming trying to feed both twins (the last two weeks in the they got hooked on bottle feedings on the overnights and certain feedings during the day when I was preparing for their arrival home. I ended up having to bottle feed them both, then try and pump once I got them settled, just to realize it was almost time to get their bottles ready for the next feed...you figure it was taking them betweeen 30-40 minutes to eat, 20-30 to hold Champ after he ate and then I wanted to hold Beanie as well because I looooove her too, then about 20 minutes to pump and store the milk. By the time I was done pumping and maybe used to restroom, it was about time to start thinking about getting bottles warmed and diapers changed for the next feeding. And let's not even talk about trying to feed and pump overnight. Anyway, we recognized it was too stressful on me and taking too much time away from enjoying the twins while asleep (holding) and awake (playing), and I am at peace with the decision I made to discontinue pumping. I tried hard, and they nursed in the NICU and received my milk for 5 months. I tried my best and that's what counts. Although of course I am a little bummed the frozen supply is gone. Luckily they had zero problem transitioning to straight formula. They gobbled it up like it tasted the same...thank GOD! I called the pedi today to ask if they still needed their iron suppliment and vitamin since now they are on straight formula. She hasn't called back yet, so we'll see.
Champ is officially off Pregnisolone (steroid) and doing great! I am so happy...let's keep praying he does fine without it. He has been on steroids FOREVER (scary thought) but he is getting big I think new lung tissue has grown and he is stronger in the lung department.
Serena has her barium swallow scheduled. We need to check on her because not only does she have a hoarse cry, she also chokes when eating quite a bit. I pray everything is okay and she will not need surgery or anything. We will also be seeing a ENT specialist in Boston, but no date yet. Anyone know anything about a barium swallow? Will she hate it? What can I expect. Of course I will research, but I like to hear the personalized stories...much more helpful I think.
All in all we had a good weekend. I got some cute pics of the twins and Champ and his Uncle Ethan!
Sunday, March 11, 2007
Random post at 5am
Hello all. Well it's a little after 5am and I debating whether or not to go to sleep. I know Champ will be awake soon and Beana jsut went to sleep after taking more of her bottle! I guess I am pretty lucky when it comes to feeding these little ones. They are really good eaters, especially considering long periods of intubation. On average Champ takes between 3-4 ounces every 3-4 hours, however will usually have at least one period in the day when he takes a larger volume, say like 5 ounces. Serena is so hard to pin down. Sometimes she'll only take 2 ounces, but has been known to take 7 over an hour span. Her average is about 3-3 1/2 as well, but like her brother will do some bigger volumes. Like now, she started eating at 4:15, I thought she was done, changed her diaper, changed her outfit (too drooly) and she was WIDE awake and eating her fists, something she does when she is hungry. So more bottle for Beana took 4 1/2 since 4:15.
In other news, neither one has repeated their smiles, which kinda bummed me out, but they are so into staring at Edwin and I which makes me happy. It's amazing. Sometimes I get this panic that maybe they can't really see and it's all in our heads (they both had laser surgery for ROP and the opthamologist can't confirm what their vision is until they get a little older...no retinal detachment or anything which is good), but I am pretty sure they can see because they track objects and they look to our voices, which I guess confirms they can hear too even though they haven't done too well at the audiology appointments. ::sigh:: Mom of micropreemie stuff....
In other other news, I went to my brother's 4th birthday party yesterday. No, that wasn't a mistype, I do have a 4 year old brother, and no, I am not a 13 year old mother, I'm 24 thanks. haha. He is my half brother, and he is a doll. Edwin, Sr stayed home with the kiddos and I headed out for 2 hours of swimming, (indoor pool obviously), crafts, cake, presents, and John Dear (the theme of Ethan's Bday). It was fun and the kids were so cute, aren't they all? I couldn't help but think about Serena and Edwin's birthday parties, which of course led to a semi-panic attack because I became scared and paranoid that what if they were teased and kids were mean and no one came to their party? I need to stop obsessing, I think it's hormonal.
Sometimes I wonder if it would be better if I were naive. Edwin Sr is really amazing, especially in his optimism concerning the twins. I often wonder if it is a result of his true faith they will be okay, him trying to make me feel better, or his ignorance about micropreemies, and I say that in a nice way. It's not that he doesn't care or can't read, he just doesn't read and I don't think would fully grasp everything even if he did. First off, English is his second language. He wasn't born in the United States, and even though he quickly transitioned to English speaking classes from bilingual as a teen, Spanish was the language spoken at home, and it wasn't until we started dating that he ever spoke English on a daily basis (his family owns a store mostly catered to Spanish-speaking customers, his boxing coach speaks Spanish to him most times, especially if he is fighting an English speaking fighter, and all of his close friends speak Spanish). Neadless to say, throughout the NICU days and even still, I am really the one who talks to the Drs about the twins, works with the nursing staff agency, O2 company, EI, and the like. I don't mind of course, but in a sense I wonder if Edwin is more at ease and enjoys the twins more than I do because he doesn't read up on micropreemies? Even in the NICU he always swore everything would be fine. When they asked us to start considering taking Champ off support, that he didn't have a shot in hell, Edwin was the one who told me they were wrong. He wasn't completely naive, in fact, this is hard for me to admit now, but we seriously talked about ending support especially since we couldn't get him off the oscillator and his settings were increasing up until the day he hit 28 days and was given dexamethazone. We both agreed we wouldn't get his PDA ligated if he didn't respond to the steroids, our son's last days would not be spent having heart surgery out in Boston. He would be held by our family and be pain-free. But I digress, he did respond and he defined all odds, and he proved Daddy right, which is what he says to me everytime I bark off statistics concerning outcomes. Here is a typical conversation in the Rodriguez home:
::Stephie (as Edwin lovingly refers to me as) is crying about the what ifs::
Edwin: "Stephie, what percent chance of survival did they tell us the twins had when they first came down to the hospital room before they were born?" (side note I was 23 and 2 that day) "I don't know Edwin." "Tell me, what was it?" "Like 50 or 60 percent if I got 48 hours worth of steroid shots before their birth." (side note: our NICU had pretty good stats on 23 weekers even though they brought old stats and only 2 were born that year, we found out later that they usually do better than the national average). "And Stephie, what did they say about Edwin when he was 3 1/2 weeks old?" "That he had 'close to a zero percent chance of survival and it would be nothing short of a miracle if he survived.'" "Exactly. They are strong, and they are fighters like their Daddy and they are going to be fine."
I kinda like that whole way of thinking but it's just not me. I wonder if life would be easier if it was?
I know one thing, I'll continue to research and do what's right for Serena and Edwin, we are so lucky we have received support since day one from developmental specialists, and were involved with EI even before the twins discharge. We can have the twins be seen weekly, biweekly, monthly, whatever we want. Our EI worker was a NICU nurse, has her own triplets, has done a lot fof work with micropreemies, and is super nice. We also have access to OT, PT, Speech therapy and the like as soon as it is needed. I guess we're lucky to have such great resources, especially from reading other blogs.
Anyway, I am way too overtired to be typing and I bet when I reread this tomorrow, I will be like okay Steph, this makes zero sense and is a complete rambling session...but isn't that partly why we all write? Thanks for the therapy session...I'm off to double check on the love bugs and hop into bed for 2 hours!
In other news, neither one has repeated their smiles, which kinda bummed me out, but they are so into staring at Edwin and I which makes me happy. It's amazing. Sometimes I get this panic that maybe they can't really see and it's all in our heads (they both had laser surgery for ROP and the opthamologist can't confirm what their vision is until they get a little older...no retinal detachment or anything which is good), but I am pretty sure they can see because they track objects and they look to our voices, which I guess confirms they can hear too even though they haven't done too well at the audiology appointments. ::sigh:: Mom of micropreemie stuff....
In other other news, I went to my brother's 4th birthday party yesterday. No, that wasn't a mistype, I do have a 4 year old brother, and no, I am not a 13 year old mother, I'm 24 thanks. haha. He is my half brother, and he is a doll. Edwin, Sr stayed home with the kiddos and I headed out for 2 hours of swimming, (indoor pool obviously), crafts, cake, presents, and John Dear (the theme of Ethan's Bday). It was fun and the kids were so cute, aren't they all? I couldn't help but think about Serena and Edwin's birthday parties, which of course led to a semi-panic attack because I became scared and paranoid that what if they were teased and kids were mean and no one came to their party? I need to stop obsessing, I think it's hormonal.
Sometimes I wonder if it would be better if I were naive. Edwin Sr is really amazing, especially in his optimism concerning the twins. I often wonder if it is a result of his true faith they will be okay, him trying to make me feel better, or his ignorance about micropreemies, and I say that in a nice way. It's not that he doesn't care or can't read, he just doesn't read and I don't think would fully grasp everything even if he did. First off, English is his second language. He wasn't born in the United States, and even though he quickly transitioned to English speaking classes from bilingual as a teen, Spanish was the language spoken at home, and it wasn't until we started dating that he ever spoke English on a daily basis (his family owns a store mostly catered to Spanish-speaking customers, his boxing coach speaks Spanish to him most times, especially if he is fighting an English speaking fighter, and all of his close friends speak Spanish). Neadless to say, throughout the NICU days and even still, I am really the one who talks to the Drs about the twins, works with the nursing staff agency, O2 company, EI, and the like. I don't mind of course, but in a sense I wonder if Edwin is more at ease and enjoys the twins more than I do because he doesn't read up on micropreemies? Even in the NICU he always swore everything would be fine. When they asked us to start considering taking Champ off support, that he didn't have a shot in hell, Edwin was the one who told me they were wrong. He wasn't completely naive, in fact, this is hard for me to admit now, but we seriously talked about ending support especially since we couldn't get him off the oscillator and his settings were increasing up until the day he hit 28 days and was given dexamethazone. We both agreed we wouldn't get his PDA ligated if he didn't respond to the steroids, our son's last days would not be spent having heart surgery out in Boston. He would be held by our family and be pain-free. But I digress, he did respond and he defined all odds, and he proved Daddy right, which is what he says to me everytime I bark off statistics concerning outcomes. Here is a typical conversation in the Rodriguez home:
::Stephie (as Edwin lovingly refers to me as) is crying about the what ifs::
Edwin: "Stephie, what percent chance of survival did they tell us the twins had when they first came down to the hospital room before they were born?" (side note I was 23 and 2 that day) "I don't know Edwin." "Tell me, what was it?" "Like 50 or 60 percent if I got 48 hours worth of steroid shots before their birth." (side note: our NICU had pretty good stats on 23 weekers even though they brought old stats and only 2 were born that year, we found out later that they usually do better than the national average). "And Stephie, what did they say about Edwin when he was 3 1/2 weeks old?" "That he had 'close to a zero percent chance of survival and it would be nothing short of a miracle if he survived.'" "Exactly. They are strong, and they are fighters like their Daddy and they are going to be fine."
I kinda like that whole way of thinking but it's just not me. I wonder if life would be easier if it was?
I know one thing, I'll continue to research and do what's right for Serena and Edwin, we are so lucky we have received support since day one from developmental specialists, and were involved with EI even before the twins discharge. We can have the twins be seen weekly, biweekly, monthly, whatever we want. Our EI worker was a NICU nurse, has her own triplets, has done a lot fof work with micropreemies, and is super nice. We also have access to OT, PT, Speech therapy and the like as soon as it is needed. I guess we're lucky to have such great resources, especially from reading other blogs.
Anyway, I am way too overtired to be typing and I bet when I reread this tomorrow, I will be like okay Steph, this makes zero sense and is a complete rambling session...but isn't that partly why we all write? Thanks for the therapy session...I'm off to double check on the love bugs and hop into bed for 2 hours!
Saturday, March 10, 2007
Beanie smiles!
My Champ
My Beana
Serena Lynn smiled and meant it this morning! I was holding her and saying "hi Beanie, hi Beanie" over and over smiling and laughing. It started out with a smirk and ended up a huge grin. She did it again (big grin) and several smirks in between. My last post was depressing and I guess I should be focused on what Beana and Champ are doing and not worrying about what they MIGHT not be able to do. So everyone who doesn't believe in treating 23 weekers can continue to indulge in medical studies and statistics; I guess my two have taught me to just be thankful for the gift of life.
My Beana
Serena Lynn smiled and meant it this morning! I was holding her and saying "hi Beanie, hi Beanie" over and over smiling and laughing. It started out with a smirk and ended up a huge grin. She did it again (big grin) and several smirks in between. My last post was depressing and I guess I should be focused on what Beana and Champ are doing and not worrying about what they MIGHT not be able to do. So everyone who doesn't believe in treating 23 weekers can continue to indulge in medical studies and statistics; I guess my two have taught me to just be thankful for the gift of life.
Friday, March 9, 2007
Audiology, Pulmonology, and Mommy's emotional breakdown
Hello all...
Yesterday we had a busy day with Drs appointments. First was Audiology. Serena had a repeat intensive hearing exam in which little probes are attached to three places on her head and little plastic things stuck in her ears...alien adventures pretty much. I stayed for awhile but before she was done it was Edwin's turn, so Daddy stayed with Bean and I went in with Edwin. As mentioned in a previous post, Edwin passed his screen at the NICU, however when Serena's test was redone upon discharge because she referred in her left ear, if was found that she also had VERy mild loss in her right...well considering she passed on her right and still had loss when checked after discharge I requested Edwin be seen. Instead of the intensive test they did a quicker one that doesn't give as much information, but does produce results. Well Edwin failed on both ears, as did Serena this time and last time. Apparently because it was found that both have fluid behind their eardrums, this test will not produce passing results. So we didn't get much information on Edwin other than he has fluid too. As for Serena her hearing improved from last month, and now her left ear if better than her right...go figure. Either way she is hearing well and can hear voices and we are assuming Edwin can as well. We will go back in another month and test for fluid and if it is present they will be referred to a Pedi ENT Dr (ear nose and throat Dr). Hopefully the fluid drains out by then.
After the Audiologist was the Pulmonologist. I told him how much better Edwin was doing with his sats sitting at 97-100 most of the time when awake and asleep. He stated we could discontinue the apnea and brady monitor they have at night, they never really had those spells but it was protocol to send both home with one.
As for Edwin he weighed a whopping 8 pounds 7 ounces and was 19 inches long. Serena weighed 7 pounds 12 ounces and was a little over 19 inches long. According to the pulmonolgist's scale they have gained 2 pounds in a month. They were pleased and so were we.
And the best news was we can now WEAN! He wanted Edwin to wait until next Sat since his last dose of steroids will be this Sat, and we wants him to have a week steroid free before the wean. We will go down by 50ccs every other week as tolerated. I already weaned Serena to 250ccs and she is doing great! Same sats as before the wean....97-100. He said when they get to about 100ccs they will probably be ready to have opportunities to try time without the cannula for small periods throughout the day. We still have a long way to go (probably about 6 months) but it's nice to know we are finally starting. Serena will also be seen by a specialist in Boston for her lack-of cry...the hoarse sounds she makes when crying and sometimes breathing. We hope for the best with that of course.
After the pulomonolgist I came home in fine spirits, it wasn't until I started on the computer that Mommy's meltdown began. I read Holland and Eden's post as I do everytime I am on (as well as all of our other preemie friends) and I totally felt where Billie is coming from. I don't know if it makes me a bad mom, but I can't shake the panic and fear associated with the unknown in terms of Serena and Edwin's longterm prognosis. I want so desperately for them to enjoy life and not suffer with any type of serious disability. I wish I could magically make them well and avoid any of the serious conditions they are at risk for. Well anyway, I did something I probably shouldn't have done...I googled "long term outcomes for 23 weekers." Devastation was everywhere. I stumbled upon a lot of Ms Hellen's posts...HH as I've seen her referred to on eblogger. I read how bravely and intelligently Hallie's Mom stood up to her intensely negative posts. Reading these statisitics and the personal and ethical beliefs and debates surrounding micropreemies crushed my spirits. I feel guilty to say that even looking at my beautiful children did not eradicate my misery. I was overcome with emotion and screamed and balled my eyes out for over an hour. Edwin Sr was in shock of my behavior and tried to soothe me but the only thing that would've made it better would be for someone to tell me Serena and Edwin would be spared any of the issues that were brought up in the stats. Reading the posts from people who are opposed to treating babies born at 23 weeks made me feel a huge sense of guilt. We were presented with the choice to treat or not. But you tell me, as a parent how was I suppose to say I didn't want them to treat when I am hearing there is a chance they'll survive and that NO ONE knows what the future will hold even after their NICU course if complete and they make it home? How could Edwin or I ever live with ourselves if we chose not to treat our twins? Forever we would be haunted by the what ifs, and I know I could never get over that pain. But at the same time what if in choosing to treat, I selfishly sentenced my children to a life of pain and unacceptance? Of course we will accept them, but what about society? The cruelty in which people wrote about people with disabilitis stung me like a thousand needles....burden on society, too expensive, burden on the school system, etc etc etc. I felt so selfish when crying because I wasn't only crying for Serena and Edwin, I was crying for myself. This is brutally honest, and I hope I don't seem like an unloving mother, but I cried for myself because what if Serena and Edwin have severe complications related to their prematurity? I wanted so badly for my children to enjoy things like the prom, going to college, falling in love, getting married, and having children of their own. I know I will love them no matter what, but I can't help but feel a sense of loss when thinking that there is a possibilty that these things may never happen. I want to stay strong and be positive, but the reality is, there are a lot of very educated people out there saying that 23 weeks is just too early to save babies. The NICU we were at brought me statistics of survival and they brought me the 2004 stats in which 2 23 weekers were saved and both survived. I don't know how people like HH could expect that parents, especially when mom is active labor, are expected to weigh all of the options at that emotional and frantic time and make a decision not to treat? I guess she and others made me feel like I made the wrong decision and I was sentencing my children and our family to a life of misery and despair. I know I will not live life like that, but it is hard to think you might have harmed your child by the decisions you made. I know I am going on and on but this is a huge debate in society and I can't believe I am semi-involved in it. I can't imagine life without Serena and Edwin. I guess what is scary is that everything seems so normal now. They are so sweet and so cute and are accomplishing things every day. I just worry that one day the clouds will roll in and we will receive some horrible news. It would be one thing if this happened without our control...say if our children had a genetic disorder or something, but we CHOSE to save them and even though I will never regret it, there are people who think we shouldn't have, and my greatest fear is that Serena and Edwin will agree with those people. Am I horrible?
Yesterday we had a busy day with Drs appointments. First was Audiology. Serena had a repeat intensive hearing exam in which little probes are attached to three places on her head and little plastic things stuck in her ears...alien adventures pretty much. I stayed for awhile but before she was done it was Edwin's turn, so Daddy stayed with Bean and I went in with Edwin. As mentioned in a previous post, Edwin passed his screen at the NICU, however when Serena's test was redone upon discharge because she referred in her left ear, if was found that she also had VERy mild loss in her right...well considering she passed on her right and still had loss when checked after discharge I requested Edwin be seen. Instead of the intensive test they did a quicker one that doesn't give as much information, but does produce results. Well Edwin failed on both ears, as did Serena this time and last time. Apparently because it was found that both have fluid behind their eardrums, this test will not produce passing results. So we didn't get much information on Edwin other than he has fluid too. As for Serena her hearing improved from last month, and now her left ear if better than her right...go figure. Either way she is hearing well and can hear voices and we are assuming Edwin can as well. We will go back in another month and test for fluid and if it is present they will be referred to a Pedi ENT Dr (ear nose and throat Dr). Hopefully the fluid drains out by then.
After the Audiologist was the Pulmonologist. I told him how much better Edwin was doing with his sats sitting at 97-100 most of the time when awake and asleep. He stated we could discontinue the apnea and brady monitor they have at night, they never really had those spells but it was protocol to send both home with one.
As for Edwin he weighed a whopping 8 pounds 7 ounces and was 19 inches long. Serena weighed 7 pounds 12 ounces and was a little over 19 inches long. According to the pulmonolgist's scale they have gained 2 pounds in a month. They were pleased and so were we.
And the best news was we can now WEAN! He wanted Edwin to wait until next Sat since his last dose of steroids will be this Sat, and we wants him to have a week steroid free before the wean. We will go down by 50ccs every other week as tolerated. I already weaned Serena to 250ccs and she is doing great! Same sats as before the wean....97-100. He said when they get to about 100ccs they will probably be ready to have opportunities to try time without the cannula for small periods throughout the day. We still have a long way to go (probably about 6 months) but it's nice to know we are finally starting. Serena will also be seen by a specialist in Boston for her lack-of cry...the hoarse sounds she makes when crying and sometimes breathing. We hope for the best with that of course.
After the pulomonolgist I came home in fine spirits, it wasn't until I started on the computer that Mommy's meltdown began. I read Holland and Eden's post as I do everytime I am on (as well as all of our other preemie friends) and I totally felt where Billie is coming from. I don't know if it makes me a bad mom, but I can't shake the panic and fear associated with the unknown in terms of Serena and Edwin's longterm prognosis. I want so desperately for them to enjoy life and not suffer with any type of serious disability. I wish I could magically make them well and avoid any of the serious conditions they are at risk for. Well anyway, I did something I probably shouldn't have done...I googled "long term outcomes for 23 weekers." Devastation was everywhere. I stumbled upon a lot of Ms Hellen's posts...HH as I've seen her referred to on eblogger. I read how bravely and intelligently Hallie's Mom stood up to her intensely negative posts. Reading these statisitics and the personal and ethical beliefs and debates surrounding micropreemies crushed my spirits. I feel guilty to say that even looking at my beautiful children did not eradicate my misery. I was overcome with emotion and screamed and balled my eyes out for over an hour. Edwin Sr was in shock of my behavior and tried to soothe me but the only thing that would've made it better would be for someone to tell me Serena and Edwin would be spared any of the issues that were brought up in the stats. Reading the posts from people who are opposed to treating babies born at 23 weeks made me feel a huge sense of guilt. We were presented with the choice to treat or not. But you tell me, as a parent how was I suppose to say I didn't want them to treat when I am hearing there is a chance they'll survive and that NO ONE knows what the future will hold even after their NICU course if complete and they make it home? How could Edwin or I ever live with ourselves if we chose not to treat our twins? Forever we would be haunted by the what ifs, and I know I could never get over that pain. But at the same time what if in choosing to treat, I selfishly sentenced my children to a life of pain and unacceptance? Of course we will accept them, but what about society? The cruelty in which people wrote about people with disabilitis stung me like a thousand needles....burden on society, too expensive, burden on the school system, etc etc etc. I felt so selfish when crying because I wasn't only crying for Serena and Edwin, I was crying for myself. This is brutally honest, and I hope I don't seem like an unloving mother, but I cried for myself because what if Serena and Edwin have severe complications related to their prematurity? I wanted so badly for my children to enjoy things like the prom, going to college, falling in love, getting married, and having children of their own. I know I will love them no matter what, but I can't help but feel a sense of loss when thinking that there is a possibilty that these things may never happen. I want to stay strong and be positive, but the reality is, there are a lot of very educated people out there saying that 23 weeks is just too early to save babies. The NICU we were at brought me statistics of survival and they brought me the 2004 stats in which 2 23 weekers were saved and both survived. I don't know how people like HH could expect that parents, especially when mom is active labor, are expected to weigh all of the options at that emotional and frantic time and make a decision not to treat? I guess she and others made me feel like I made the wrong decision and I was sentencing my children and our family to a life of misery and despair. I know I will not live life like that, but it is hard to think you might have harmed your child by the decisions you made. I know I am going on and on but this is a huge debate in society and I can't believe I am semi-involved in it. I can't imagine life without Serena and Edwin. I guess what is scary is that everything seems so normal now. They are so sweet and so cute and are accomplishing things every day. I just worry that one day the clouds will roll in and we will receive some horrible news. It would be one thing if this happened without our control...say if our children had a genetic disorder or something, but we CHOSE to save them and even though I will never regret it, there are people who think we shouldn't have, and my greatest fear is that Serena and Edwin will agree with those people. Am I horrible?
Tuesday, March 6, 2007
Smiles!
As usual thank you for the the advice. It was definitely helpful.
In other news, Edwin smiled for real today!!!! They both have made smirls and seem to smile in their sleep, but never seemed to smile because of something we did. Well today, Daddy Edwin started sticking out his tongue at Edwin, from now on referred to as his nickname which is Champ (EI told us to try that to see if they would mimic), and all of a sudden Champ gave this HUGE grin on his face. He did it another 3 times when Daddy tried it again! We tried it when I got the camera out and of course he didn't do it again after that :( We tried it with Serena about 10000 times but all she did was stare at us and go crossed-eyed. I think she might do it soon too because she is really focusing on us lately. We are so excited to see them mature in front of our eyes. They are practicing pushing up from their tummies with their forearms when their on our chests and trying to balance their heads. They try so hard...it's cute. I need to find the cord to load the digital camera photos, we plugged in the scanner instead and now I can't find the cord for the camera! I'll post pics as soon as I find it!
In other news, Edwin smiled for real today!!!! They both have made smirls and seem to smile in their sleep, but never seemed to smile because of something we did. Well today, Daddy Edwin started sticking out his tongue at Edwin, from now on referred to as his nickname which is Champ (EI told us to try that to see if they would mimic), and all of a sudden Champ gave this HUGE grin on his face. He did it another 3 times when Daddy tried it again! We tried it when I got the camera out and of course he didn't do it again after that :( We tried it with Serena about 10000 times but all she did was stare at us and go crossed-eyed. I think she might do it soon too because she is really focusing on us lately. We are so excited to see them mature in front of our eyes. They are practicing pushing up from their tummies with their forearms when their on our chests and trying to balance their heads. They try so hard...it's cute. I need to find the cord to load the digital camera photos, we plugged in the scanner instead and now I can't find the cord for the camera! I'll post pics as soon as I find it!
Monday, March 5, 2007
Projectile Vomit! HELP!
So I mentioned Edwin's reflux in a previous post. Well over the past couple of weeks he has projectile vomitted on average one feeding per day. He is on Zantac and we added Mylicone drops for his gassiness. I also tried Similac with Alimentum and neither he nor Serena can stand it. It smells GROSS...just like cheap, dry cat food. Daddy Edwin, who used to eat scoopfuls of Similac powder as a child, stealing it from his infant brothers, decided to test out the Sim Alimentum. Upon taking a coopful he ran into the bathroom where I was finally able to take my first shower of the day at 10:30pm, and screamed "Edwin can't eat that milk!" Why? I asked. "It tastes GROSS!!!!!" Well, the twins agreed, and made the most priceless faces of disgust when I gave it to them...I had to make sure they were going to hate it...we have like 3 cases of the darn stuff!
So anyway, I have tried different bottles, different nipples, the gas drops, the Zantac, the funny smelling supposedly easy to digest, better for colic babies formula and NOTHING is helping. He will be taking his bottle with no issue, having burped well throughout the feed, and all of a sudden he will begin gagging or coughing and you know it's coming. Get the burp diaper in place because it's 'acomin'! It's horrible and I feel so bad. I remember being pregnant and vomitting once a day. It is not fun and I fear it will affect his desire to eat...although thankfully it hasn't yet. I don't understand what I can do. I wish I understood exactly why he was vomitting. I know he is a preemie and the immaturity of his diestive track and esophagus and all, but what is happening? WHy is some of his meal coming up at some points during the day, and other times he is fine? He went 2 days without any puking, and I thought we were good, well he did it twice for the nurse last night, and once this afternoon. I wish there was an answer. It seems like I have tried a whole bunch of remedies, but I guess I need to understand better why this is happening. The Zantac helps with aciditiy, but that won't stop the vomitting. The gas drops help with gas, and bottles and nipples can help avoid swallowing air thereby producing less gas, but what about the projectile vomitting? Is it a result of gas build up that brings up the food with a cough or a burp? I just don't get it and it seems the remedy I'm getting is increase his Zantac dose. Will that help? What other options do we have? Since he is gaining weight so well there is nothing the pedi wants to do, but I want my son to stop puking every day! Any suggestions?
So anyway, I have tried different bottles, different nipples, the gas drops, the Zantac, the funny smelling supposedly easy to digest, better for colic babies formula and NOTHING is helping. He will be taking his bottle with no issue, having burped well throughout the feed, and all of a sudden he will begin gagging or coughing and you know it's coming. Get the burp diaper in place because it's 'acomin'! It's horrible and I feel so bad. I remember being pregnant and vomitting once a day. It is not fun and I fear it will affect his desire to eat...although thankfully it hasn't yet. I don't understand what I can do. I wish I understood exactly why he was vomitting. I know he is a preemie and the immaturity of his diestive track and esophagus and all, but what is happening? WHy is some of his meal coming up at some points during the day, and other times he is fine? He went 2 days without any puking, and I thought we were good, well he did it twice for the nurse last night, and once this afternoon. I wish there was an answer. It seems like I have tried a whole bunch of remedies, but I guess I need to understand better why this is happening. The Zantac helps with aciditiy, but that won't stop the vomitting. The gas drops help with gas, and bottles and nipples can help avoid swallowing air thereby producing less gas, but what about the projectile vomitting? Is it a result of gas build up that brings up the food with a cough or a burp? I just don't get it and it seems the remedy I'm getting is increase his Zantac dose. Will that help? What other options do we have? Since he is gaining weight so well there is nothing the pedi wants to do, but I want my son to stop puking every day! Any suggestions?
Saturday, March 3, 2007
Pictures after Daddy's big win
Edwin on the left Serena on the right
Wake up sister!!!
A kiss for you
Edwin in Daddy's trophy
Daddy won the New England Golden Gloves and earned the OUtstanding boxer of the tournament!
Serena's turn
Proud of Daddy!
Wake up sister!!!
A kiss for you
Edwin in Daddy's trophy
Daddy won the New England Golden Gloves and earned the OUtstanding boxer of the tournament!
Serena's turn
Proud of Daddy!
Subscribe to:
Posts (Atom)